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Vanishing White Matter (VWM) disease
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Help me understand
I’m 32 next and since I was 25 I have had terrible joint pain and flare ups with terrible painful stiffness and swelling. Always in both my knees sometimes both my elbows all at the same time, I feel and ache all over with fatigue! I’ve been to the drs numerous times over the years with no help when
I’m 32 next and since I was 25 I have had terrible joint pain and flare ups with terrible painful stiffness and swelling. Always in both my knees sometimes both my elbows all at the same time, I feel and ache all over with fatigue! I’ve been to the drs numerous times over the years with no help when
Crazycatlady_101
in
NRAS
4 months ago
worrying heart rate through the night
I have started to wear my Fitbit to bed after my AF diagnosis but I am very worried that it says, while in AF all night, my heart beat ranges from39 to 169. I take Carvedilol 12.5mg and Apixaban 5mg twice a day. It has taken me ages to be brave enough to wear it at night but I’m thinking I might be
I have started to wear my Fitbit to bed after my AF diagnosis but I am very worried that it says, while in AF all night, my heart beat ranges from39 to 169. I take Carvedilol 12.5mg and Apixaban 5mg twice a day. It has taken me ages to be brave enough to wear it at night but I’m thinking I might be
Wilky57
in
Atrial Fibrillation Support
2 months ago
Blood flow through liver
Hello all I had a ultrasound just over a month ago but got results today showing a fatty liver and slow or low blood through my liver the nurse practitioner giving me my results could give me no reason as to why as by all accounts scarring wasn't seen only fat deposits. My liver enzymes have been rising
Hello all I had a ultrasound just over a month ago but got results today showing a fatty liver and slow or low blood through my liver the nurse practitioner giving me my results could give me no reason as to why as by all accounts scarring wasn't seen only fat deposits. My liver enzymes have been rising
nettiboo1982
in
Thyroid UK
7 months ago
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T3 only and heart rate
Hi all, I was started on liothyronine only 6 months ago and it has been life changing. It has resolved 4 years of debilitating symptoms, including chronic fatigue. I have faulty D102 and am a poor converter. I was finally taken off levothyroxine following abnormal ECG and tachycardia. I had a scan and
Hi all, I was started on liothyronine only 6 months ago and it has been life changing. It has resolved 4 years of debilitating symptoms, including chronic fatigue. I have faulty D102 and am a poor converter. I was finally taken off levothyroxine following abnormal ECG and tachycardia. I had a scan and
Mhaire
in
Thyroid UK
2 months ago
Would you like to know more about your antiarrhythmic medication?
Upon diagnosis of Atrial fibrillation (AF) many are prescribed antiarrhythmic medication(s). These help to restore the normal (sinus) heart rhythm. They work by blocking specific electrical conduction channels in the heart. Some can slow the activation of the heart muscle, and others slow the recovery
Upon diagnosis of Atrial fibrillation (AF) many are prescribed antiarrhythmic medication(s). These help to restore the normal (sinus) heart rhythm. They work by blocking specific electrical conduction channels in the heart. Some can slow the activation of the heart muscle, and others slow the recovery
TracyAdmin
Partner
in
Atrial Fibrillation Support
2 months ago
Stress and thyroid disease
I have an treated underactive thyroid and i’m on levothyroxine. I’ve had hypothyroidism for 35 years, I’m now 61.. I’m finding that any stressful situation makes me feel very odd, all over the place, and feeling lime Ive drunk 30 cups of coffee. Awful.. Can that happen with thyroid disease. Any advice
I have an treated underactive thyroid and i’m on levothyroxine. I’ve had hypothyroidism for 35 years, I’m now 61.. I’m finding that any stressful situation makes me feel very odd, all over the place, and feeling lime Ive drunk 30 cups of coffee. Awful.. Can that happen with thyroid disease. Any advice
Atma123
in
Thyroid UK
4 months ago
Possible kidney disease
Hi friends, after a recent flare-up I got some routine testing done, and one of the kidney markers showed up in a urine test. It showed micro-proteins, or mircoalbuminuria, which is different to the protein that shows up for a UTI. Apparently, the microalbuminuria means the kidneys are leaking, which
Hi friends, after a recent flare-up I got some routine testing done, and one of the kidney markers showed up in a urine test. It showed micro-proteins, or mircoalbuminuria, which is different to the protein that shows up for a UTI. Apparently, the microalbuminuria means the kidneys are leaking, which
MusicalFurbaby
in
LUPUS UK
7 months ago
Is HE always inevitable with severe chronic liver disease?
My daughter has been told there is nothing more the doctors can do for her multiple hepatic adenomas. Transplant is not an option, due to serious underlying health conditions and also total lack of fitness . She has at least 15 of these tumours taking over her liver now. She has had a resection last
My daughter has been told there is nothing more the doctors can do for her multiple hepatic adenomas. Transplant is not an option, due to serious underlying health conditions and also total lack of fitness . She has at least 15 of these tumours taking over her liver now. She has had a resection last
Mami77
in
British Liver Trust
7 months ago
Atrial Fibrillation
I'm in the process of finding out which blood thinner is best for me. Started with bisoprolol 1.25mg twice daily and feeling ill so have changed to Edoxaban causing cold hands and feet and breathlessness. I feel that my Cardiologist hasn't taken into consideration my other health conditions, i.e. Asthma
I'm in the process of finding out which blood thinner is best for me. Started with bisoprolol 1.25mg twice daily and feeling ill so have changed to Edoxaban causing cold hands and feet and breathlessness. I feel that my Cardiologist hasn't taken into consideration my other health conditions, i.e. Asthma
magriff1
in
Pain Concern
2 months ago
Low O2
CAPS survivor here. Lately my O2 has been consistently between 87% -93% resting and walking. A trip to the ER the other day showed no PE and clear lungs. They want to follow up with pulmonologist but I think it's my blood flow. My lungs feel fine! I'm on warfarin. Anybody else going through this?
CAPS survivor here. Lately my O2 has been consistently between 87% -93% resting and walking. A trip to the ER the other day showed no PE and clear lungs. They want to follow up with pulmonologist but I think it's my blood flow. My lungs feel fine! I'm on warfarin. Anybody else going through this?
grandmagigitovivi
in
Hughes Syndrome APS Forum
2 months ago
Two weeks after ablation and I'm on the list for a cardioversion
It's two weeks today since I had an ablation for AF. I wasn't in AF before or immediately after the procedure but felt bad on day two with racing irregular pulse, dizziness etc. I had an ecg last week which showed me to be in AF and the arrhythmia nurse has called to let me know and tell me that I've
It's two weeks today since I had an ablation for AF. I wasn't in AF before or immediately after the procedure but felt bad on day two with racing irregular pulse, dizziness etc. I had an ecg last week which showed me to be in AF and the arrhythmia nurse has called to let me know and tell me that I've
JoDogBlue
in
Atrial Fibrillation Support
2 months ago
pernicious anaemia
Hi I had the results of my intrinsic test and I have pernicious anaemia I start loading doses on Monday ,Do you think it is likely to affect my INR and if so up or down Thanks
Hi I had the results of my intrinsic test and I have pernicious anaemia I start loading doses on Monday ,Do you think it is likely to affect my INR and if so up or down Thanks
mully
in
Hughes Syndrome APS Forum
4 months ago
Orgovyx and its side effects on the heart's electrical system
I've been taking Orgovyx for over two years with few side effects. But I have been experiencing episodes of dizziness and light-headedness over the last few months. My cardiologist has diagnosed bradycardia (a slow heart beat that can cause such episodes). I will need a pacemaker. I know a side effect
I've been taking Orgovyx for over two years with few side effects. But I have been experiencing episodes of dizziness and light-headedness over the last few months. My cardiologist has diagnosed bradycardia (a slow heart beat that can cause such episodes). I will need a pacemaker. I know a side effect
Boonster
in
Advanced Prostate Cancer
2 months ago
INR meter
Hi all, I had a stroke when I was 27 years old and 10 years later I got diagnosed with Palindromic Rheumatism, a form or Arthritis. With both, current medication is Warfarin and X is required. I feel limited about the regular INR control lead by coagulation variability. Thinking to get an INR meter
Hi all, I had a stroke when I was 27 years old and 10 years later I got diagnosed with Palindromic Rheumatism, a form or Arthritis. With both, current medication is Warfarin and X is required. I feel limited about the regular INR control lead by coagulation variability. Thinking to get an INR meter
HectorManzanoDiaz
in
Anticoagulation Support
2 months ago
Bevacizumab v Niraparib
I've had chemo/debulking surgery/ chemo, and have just come to the end of the post surgery chemo. I've been told all along that I will continue with Bevacizumab as a maintenance treatment (I've had 3 rounds of it alongside chemo, 2 before the surgery and 1 after). I caught COVID towards the end of
I've had chemo/debulking surgery/ chemo, and have just come to the end of the post surgery chemo. I've been told all along that I will continue with Bevacizumab as a maintenance treatment (I've had 3 rounds of it alongside chemo, 2 before the surgery and 1 after). I caught COVID towards the end of
LovemyJackRussell
in
My Ovacome
2 months ago
Statins with an under active thyroid.
Hi everyone. I've recently found out that my thyroid is under active. Because my LDL is elevated, the doctor decided I needed to see a specialist. They won't give me an appointment and have said I need to take a statin while they get to me. The NHS website says you don't give statins to people with an
Hi everyone. I've recently found out that my thyroid is under active. Because my LDL is elevated, the doctor decided I needed to see a specialist. They won't give me an appointment and have said I need to take a statin while they get to me. The NHS website says you don't give statins to people with an
MauveMouse
in
Thyroid UK
4 months ago
Request for advice looking for possible new diagnosis
Hi, this is my first time back on the forum after a few years break just bimbling along whilst struggling as we all do. But I've really hit a wall. I've also posted this on the Fibromyalgia and Lupus communities.I don't want to write too long a post so will try and keep the background brief. Basically
Hi, this is my first time back on the forum after a few years break just bimbling along whilst struggling as we all do. But I've really hit a wall. I've also posted this on the Fibromyalgia and Lupus communities.I don't want to write too long a post so will try and keep the background brief. Basically
Wispymisty
in
NRAS
4 months ago
Request for advice looking for possible new diagnosis
Hi, this is my first time back on the forum after a few years break just bimbling along whilst struggling as we all do. But I've really hit a wall. I've also posted this on the Fibromyalgia/Rheumatoid Arthritis communities.I don't want to write too long a post so will try and keep the background brief
Hi, this is my first time back on the forum after a few years break just bimbling along whilst struggling as we all do. But I've really hit a wall. I've also posted this on the Fibromyalgia/Rheumatoid Arthritis communities.I don't want to write too long a post so will try and keep the background brief
Wispymisty
in
LUPUS UK
4 months ago
chemo and genetic testing questions
My husband’s genetic testing of the biopsies came back. It’s 19 pages and I am having a super difficult time interpreting. His Oncologist Urologist is overwhelmed with duties and we probably won’t get reviewed at the level we need. attaching the executive summary. They said he tests positive for SPOP
My husband’s genetic testing of the biopsies came back. It’s 19 pages and I am having a super difficult time interpreting. His Oncologist Urologist is overwhelmed with duties and we probably won’t get reviewed at the level we need. attaching the executive summary. They said he tests positive for SPOP
Sunnysailor
in
Advanced Prostate Cancer
2 months ago
Sufficient Investigation?
My brother is a bit of an ostrich, over his prostate problems. He ignored his poor urinary flow for years, and despite my repeated advice which he ignored, he subsequently had to be admitted to the emergency department due to significant obstruction. His GFR had fallen dangerously to 10. He was in
My brother is a bit of an ostrich, over his prostate problems. He ignored his poor urinary flow for years, and despite my repeated advice which he ignored, he subsequently had to be admitted to the emergency department due to significant obstruction. His GFR had fallen dangerously to 10. He was in
Nordman
in
Advanced Prostate Cancer
7 months ago
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